Wednesday, January 7, 2015

12 Things I Wish I’d Known About Being a Special Needs Parent

By: Ellen Stumbo and Marci Scher

I chose to be a parent, but having a child with a disability was not a part of my plan. It felt like someone had pushed me into the deep end of a pool and I didn't know how to swim, or like I was skydiving and found out I had a faulty parachute. When I first became a special needs parent I believed our lives would be sad, limited, and somehow, less-than. Thank goodness I was wrong.

This is what I wish I had known about being a special needs parent:
  1. The sadness over the diagnosis is normal, and it does not last forever. But it will come and go, sometimes lasting longer then other times. Grieving the hopes and dreams, I had for you my son, has been something which has happened over time. Something I know will continue to happen as your journey continues.
  2. You soon discover that your child's diagnosis is only a part of who they are, it is not what defines them or gives them value. So many other things define you, you are imperfectly perfect. You are affectionate, brave, charming, compassionate, considerate, courageous, curious, dependable, determined, frustrated, funny, gentle, giving, imaginative, intelligent, lovely, loving, lucky, mischievous, picky, polite, quiet, rambunctious, respectful, scared, sensitive, silly, sincere, smart, sweet, talkative, terrified, thankful, warm-hearted, and wise beyond your young years. Your imagination takes you, along with others to many different places. 
  3. You thought you knew unconditional love simply by being a parent, but then this little person shows up in your life and challenges your heart, truly showing you what unconditional love means. No strings attached, no expectations to meet, it's just simple, pure, unadulterated love. The love has brought such joy into my life, along with sorrow...sometimes both at the same time. The love can hurt, thinking about where you will be one day breaks my heart. Over time, I know my heart will mend, although not fully, it will not be as broken. There will always be a part missing, even though you will always be in my heart.
  4. Some people will say hurtful things. Most don't want to be hurtful, they are ignorant. Try to forgive them, remember you were once ignorant too. People mean well. Some they just don't know how to show it...even the ones you think. People do the best they can, I hope others remember I do the best I can as well.
  5. Angry advocacy does not accomplish much. Always have a smile on your face, people can hear it through the phone.
  6. Don't be afraid to acknowledge hard days. Every parent has them, some days are worse than others. Add special needs to the mix and the highs are really high and the lows are really low. We all have our good days and bad days, some more then others. The roller coaster ride of our journey has been an interesting with really high highs and really low lows. Wish someone would have said how high and how low it could get.
  7. Depending on your child's condition, pooping on the potty might be the-best-accomplishment-ever! And the-best-accomplishment-ever will continually change depending on the progression of the condition. What once was the-best-accomplishment-ever maybe something which only happens once...cherish each moment. 
  8. You will laugh every time someone says, "G-d gives special children to special parents" because you know you are not special at all. You do not have any more patience, strength, or holiness than the neighbor next door. And if you have spent any time in our home, you would know this is very true for all of us. Frustration happens more often then I would like (on all ends in the house), taking a deep breath helps to try to put things back in perspective.
  9. When people say to you, "I could never do it," you will cringe inside a little because you know that loving your child is not hard at all, it's what parents do. And you will also know they could do it too if their child had a disability...unless they are terrible parents, like, to any child. I have lost count how many times this has been said ...this is life, this is reality, we don't get to pick it, take control of what you can, realize many things you don't have control over...just accept it and being angry all the time is not going to help anyone.
  10. You will feel a pride so deep for even the smallest accomplishments your child achieves. You will feel like a balloon with so much joy inside you could burst at any point. And sometimes you just might, and your neighbors will wonder what got into you that you are jumping, cheering, clapping, and making a fool of yourself in front yard. I remember this feeling happening many different times over the years...riding a bike, reading a short story, horse back riding, and recently getting back in the pool and swimming a little bit. Seeing the smile on your face and in your eyes when you accomplish something is priceless.
  11. There will be a clear distinction between your old-self and your new-self after having a child with special needs. The new-self has a much better understanding about what matters in life, about what makes our hearts beat, about the value of all life. Who is the old-self and who is the new-self...sometimes remembering who either one is, is hard to do...many changes will happen and have happened to us over the years. Some changes good, some changes bad, some changes individually, some changes together and some changes as a family...but most important we have learned to value what we have...and the time we have with each other.
  12. Your life will be rich, full, and covered in love. You will be doing somersaults in the deep end of the pool, you will love the wind on your face and learn how to soar. Our love is like the wind, you can't see it but you can feel it. Remember to TREASURE YESTERDAY, DREAM OF TOMORROW BUT LIVE FOR TODAY!


Anonymous said...

Jay Weiner
#8 because so many people want everything to happen for some greater cosmic preordained reason or to have some colossal purpose, vs accepting that sometimes things just happen.

And #9 because most of us who have never had to find out what we're capable of, don't fully realize what we're capable of. In whatever domain.

I think it's an important point for you to make that you and Brian are "just" normal people doing what any parents would do for their children. But you may have to forgive us if sometimes we're impressed with the way you use the opportunity to help open our eyes to important life lessons, or by the apparent grace with which you carry yourselves

Anonymous said...

Mindy Hammerman Lipsey
Love this post! I don't remember my "old self" but I wish that carefree person would return...especially #8